Dwight Norwood, M.S.W. LEND Fellow A.J. Pappanikou Center for Developmental Disabilities.
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Transcript of Dwight Norwood, M.S.W. LEND Fellow A.J. Pappanikou Center for Developmental Disabilities.
![Page 1: Dwight Norwood, M.S.W. LEND Fellow A.J. Pappanikou Center for Developmental Disabilities.](https://reader035.fdocuments.in/reader035/viewer/2022062518/56649c825503460f9493a8d3/html5/thumbnails/1.jpg)
Dwight Norwood, M.S.W.LEND Fellow
A.J. Pappanikou Center for Developmental Disabilities
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Life Span of People Who Are Developmentally Disabled is
Longer1960s – 25 Years averageCurrently – age 62Reason:
Better management of acute health care issuesPopulation of people with developmental
disabilities begins to look more like general population
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Does Population of People with Developmental Disabilities Use
Hospice/Palliative Care?
New Jersey study – 2003-200444% response rate (22:50)18% use of hospice & palliative care
Could be as low as 9%Compare: 38% of general population uses
hospice & palliative care
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Social Work PerspectivePeople with developmental disabilities are a
vulnerable populationThis population is underserved by hospiceHospice & palliative care are about living
well while dying Those who are developmentally disabled are
entitled to the same consideration as the general population
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Follow-up Study – Spring 2010New England hospice & palliative care
organizations Used National Hospice & Palliative Care
Organization website membership80% of all hospice & palliative care
organizations are members192 Sites/contacts
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MethodologyRe-use previous surveyAll listed members/contacts
Some organizations with multiple contact persons
Some organizations with multiple sitesInitial survey with cover letter and tracking
numberSecond survey with cover letter only
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Response
51% (94/184) response rateThirteen consistent responders to qualitative
information requestsLittle new information
Problems with survey instrumentAmbiguous questionsUnanswered questions
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Do People with Developmental Disabilities Use
Hospice/Palliative Care?
62 of 94 institutions of respondents served at least one client with developmental disability in past year (66%)
278 known clients with developmental disabilities reported served in last year in New England
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Has Usage of Hospice & Palliative Care Improved?
119,000 deaths in New England in 20071.13 % Estimated to be developmentally disabled
1,345 deaths of people with developmental disabilities 278 known served by 79 of 94 reporting organizations
If non-reporting are the same 40.5% extrapolated usage Vs. 38.5% general population
20.7% if non-respondents represent no serviceSignificant improvement from 2003-2004 NJ study
18% use of hospice & palliative care
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Other Results: ChallengesVery Significant Not
Significant5 4 3 2 1
Challenges Mean S.D.
Communication: 3.56 .98
Need for specialized training:
3.54 .90
Lack of experience: 3.41 .87
Additional Costs: 2.30 1.16
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Knowledge About DevelopmentalDisabilities
Very Knowledgeable Not Knowledgeable5 4 3 2 1
Knowledge Mean S.D.
Self 3.27 .84
Staff 3.10 .85
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Possible Sources of Error?Non-response error – 49%No count provided though service provided
Not trackedNot available
Census ambiguity4 hospitals reporting > 100 daily census failed to
report service to people with developmental disabilities
One hospital reported 1 person with developmental disability served
But daily census of 1150?How are specialized institutions served?
Southbury Group Homes
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Implications for Social WorkPeople with developmental disabilities may
still be seriously underserved compared to general population
NASW Code of Ethics: Obligation to advocate for vulnerable
populationsWe need greater awareness and better
education regarding use of hospice & palliative care by people with developmental disabilities
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Implications for PolicyProfessional caregivers need to be educated
regarding need for use of hospice/palliative care by people with developmental disabilities
Outreach to family/friends who are caregivers to provide better education regarding end-of-life options
Hospice organizations report challenges:CommunicationSpecialized trainingLack of experience
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Future ResearchWho makes end-of-life decisions for people
with developmental disabilities? Family/friendsProfessional appointees
What factors influence decision choice?RoleEducationAgePrior exposure to hospiceAttitude toward hospice
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Possible DissertationInvestigate disparity between NJ Survey
(2003-2004) and New England Survey (2010)Revise instrumentConduct national survey
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Thank you LEND!